July end of life current awareness by Musgrove Park Hospital Library

Library Services Musgrove Park and Somerset Partnership

Current Awareness End of Life This monthly Current Awareness Bulletin is produced by the Library, Musgrove Park Academy to provide staff with a range of resources focussing on end of life care. It includes recently published guidelines and research articles, news and policy items.

This guide provides a selection of resources relevant to the subject area and is not intended to be a comprehensive list. All websites have been evaluated and details are correct at the time of publications. Details correct at time of going to print. Please note that resources are continuously updated. For further help or guidance, please contact a member of library staff.

This guide has been compiled by: Jess Pawley Senior Library Assistant Musgrove Park Hospital Library Service jessica.pawley@tst.nhs.uk Issue 6 July 2016

Contents Click on a section title to navigate contents Page Results of Library Current Awareness Survey

Colleague App

Recent journal articles

Books

Guidelines

UpToDate

Reports, publications and resources

Topic Alerts and Updates

Twitter

Training & Networking Opportunities, Conferences, Events

Literature search service

Training and Athens

Library contact details: Library Musgrove Park Academy Musgrove Park Hospital Taunton Somerset TA1 5DA Tel: 01823 34 (2433)

Email: library@tst.nhs.uk Blog: http://librarymph.wordpress.com @musgrovesompar

RESULTS OF LIBRARY CURRENT AWARENESS SURVEY BACK TO TOP

During 2015-6 the library team introduced a number of new current awareness bulletins as a result of feedback from staff. Along with the fortnightly Library Alert monthly updates were produced for: Dementia Stroke End of life Sign up to safety

Mentorship Cancer ITU

While we had some feedback that these bulletins were useful, we felt due to the cost in library staff time, it would be better to have more detailed evidence. We circulated the survey via email to the various email lists, added a link on the Library webpage and also put reminders in the Library Alert and Staff Bulletin. During the month when we received 211 replies on all bulletins covering both Taunton and Somerset and Somerset Partnership staff. The final report can be found here

COLLEAGUE APP BACK TO TOP The MPH Staff App has specifically been produced and designed to offer both current and future employees relevant information related to their work. Whether seeking information about policies and procedures, following us on Twitter or even taking advantage of special offers, all can be found here.

Library monthly current awareness bulletins are also available. To download, please follow this link Please note- The app has not been created by the library. If you have any problems downloading or accessing the app then you will need to contact the IT department.

RECENT JOURNAL ARTICLES BACK TO TOP This is a list of journal articles on the topic of end of life. Some articles are available in the library or on-line via an OpenAthens password by following the full-text link. If you would like an article which is not available as full-text then please contact library staff. Please note that abstracts are not always available for all articles.

Title: Discussing death with the living Author: Flegel, Ken, MD MSc; Patrick, Kirsten, MB BCh DA Abstract: The now-global "Death Cafe" movement, begun in 2011, aims to "increase awareness of death with a view to helping people make the most of their (finite) lives."1 At a Death Cafe event, people gather to eat cake, drink tea and discuss death. The many people in 33 countries who have attended more than 2700 events organized by this not-for-profit social franchise seem to have been convinced that having a conversation about death is a good idea. This global social movement has allowed talk of death to become mainstream and positive, a buttress to the living of a full life. So-called death education courses are now offered in some universities and medical schools. A CMAJ study found that many patients and caregivers find the term "palliative care" distasteful, particularly if patients don't yet feel they are at the end of their lives. FLEGEL, K.,M.D.M.SC and PATRICK, K.,M.B.B.CH D.A., 2016. Discussing death with the living. Canadian Medical Association.Journal, 188(10), pp. 707.

Title: Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial Author: Carson, Shannon S, MD; Cox, Christopher E, MD, MPH; Wallenstein, Sylvan, PhD; Hanson, Laura C, MD, MPH; Danis, Marion, MD; Tulsky, James A, MD; Chai, Emily, MD; Nelson, Judith E, MD, JD Abstract: Carson et al determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean Hospital Anxiety and Depression Scale symptom score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean Impact of Events Scale-Revised [IES-R] score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference. 4.60 [95% CI, 0.01 to 9.10]; p = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; p = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], p = .96) were not significantly different. CARSON, S.S., M.D., COX, CHRISTOPHER E,M.D., M.P.H., WALLENSTEIN, S., PHD., HANSON, LAURA C,M.D., M.P.H., DANIS, M., M.D., TULSKY, J.A., M.D., CHAI, E., M.D. and NELSON, JUDITH E,M.D., J.D., 2016. Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial. JAMA, 316(1), pp. 51.

Title: Dealing With Major Life Events and Transitions: A Systematic Literature Review on and Occupational Analysis of Spirituality Author: Maley, Christine M; Pagana, Nicole K; Velenger, Christa A; Humbert, Tamera Keiter Abstract: None available. MALEY, C.M., PAGANA, N.K., VELENGER, C.A. and HUMBERT, T.K., 2016. Dealing With Major Life Events and Transitions: A Systematic Literature Review on and Occupational Analysis of Spirituality. The American Journal of Occupational Therapy, 70(4), pp. 1-6.

Title: Palliative care needs at different phases in the illness trajectory: a survey study in patients with cancer Author: Beernaert, K; Pardon, K; Van den Block, L; Devroey, D; De Laat, M; Geboes, K; Surmont, V; Deliens, L; Cohen, J Abstract: Despite the growing consensus on the benefits of initiating palliative care early in the disease trajectory, it remains unclear at what point palliative care needs emerge. This study investigates quality of life and unmet palliative care needs at three phases in the cancer trajectory, curative, life-prolonging and most advanced (prognosis <6 months/no further disease-modifying treatment). We collected self-reported data from 620 patients with cancer in the University Hospital of Ghent, Belgium. They completed a questionnaire on quality of life (using the EORTC QLQ-C30) and unmet care needs within the domains of palliative care. We used European reference values of the EORTC QLQ-C30 to compare the mean scores with a norm group. The groups further on in the cancer trajectory reported statistically and clinically poorer functioning compared with earlier phases, also when controlled for the effects of sex, age or type of cancer. Higher symptom burdens for fatigue, pain, dyspnoea and appetite loss were found in groups further into the trajectory, p < .001. Patients in the curative phase experienced physical symptoms and had clinically worse functioning than a European reference group. This paper demonstrates the ongoing need for oncologists to address the broader palliative care needs of patients from diagnosis onwards. BEERNAERT, K., PARDON, K., VAN, D.B., DEVROEY, D., DE LAAT, M., GEBOES, K., SURMONT, V., DELIENS, L. and COHEN, J., 2016. Palliative care needs at different phases in the illness trajectory: a survey study in patients with cancer. European Journal of Cancer Care, 25(4), pp. 534543.

Title: Homeward Bound, not hospital rebound: how transitional palliative care can reduce readmission Author: Kavalieratos, Dio; Rollman, Bruce L; Arnold, Robert M Abstract: None available. KAVALIERATOS, D., ROLLMAN, B.L. and ARNOLD, R.M., 2016. Homeward Bound, not hospital rebound: how transitional palliative care can reduce readmission. Heart, 102(14), pp. 1079.

Title: Effects of a transitional palliative care model on patients with end-stage heart failure: a randomised controlled trial Author: Wong, Frances Kam Yuet; Ng, Alina Yee Man; Lee, Paul Hong; Lam, Po-tin; Ng, Jeffrey Sheung Ching; Ng, Nancy Hiu Yim; Sham, Michael Mau Kwong Abstract: To examine the effects of home-based transitional palliative care for patients with endstage heart failure (ESHF) after hospital discharge. This was a randomised controlled trial conducted in three hospitals in Hong Kong. The recruited subjects were patients with ESHF who had been discharged home from hospitals and referred for palliative service, and who met the specified inclusion criteria. The interventions consisted of weekly home visits/telephone calls in the first 4

weeks then monthly follow-up, provided by a nurse case manager supported by a multidisciplinary team. The primary outcome measures were any readmission and count of readmissions within 4 and 2 12 weeks after index discharge, compared using Ă?[double dagger] tests and Poisson regression, respectively. Secondarily, change in symptoms over time between control and intervention groups were evaluated using generalised estimating equation analyses of data collected using the Edmonton Symptom Assessment Scale (ESAS). The intervention group (n=43) had a significantly lower readmission rate than the control group (n=41) at 12 weeks (intervention 33.6% vs control 61.0% 2 Ă?[double dagger] =6.8, p=0.009). The mean number (SE) of readmissions for the intervention and control groups was, respectively, 0.42 (0.10) and 1.10 (0.16) and the difference was significant (p=0.001). The relative risk (CI) for 12-week readmissions for the intervention group was 0.55 (0.35 to 0.88). There was no significant difference in readmissions between groups at 4 weeks. However, when compared with the control group, the intervention group experienced significantly higher clinical improvement in depression (45.9% vs 16.1%, p<0.05), dyspnoea (62.2% vs 29.0%, p<0.05) and total ESAS score (73.0% vs 41.4%, p<0.05) at 4 weeks. There were significant differences between groups in changes over time in quality of life (QOL) measured by McGill QOL (p<0.05) and chronic HF (p<0.01) questionnaires. This study provides evidence of the effectiveness of a postdischarge transitional care palliative programme in reducing readmissions and improving symptom control among patients with ESHF. WONG, F.K.Y., NG, A.Y.M., LEE, P.H., LAM, P., NG, J.S.C., NG, N.H.Y. and SHAM, M.M.K., 2016. Effects of a transitional palliative care model on patients with end-stage heart failure: a randomised controlled trial. Heart, 102(14), pp. 1100.

Title: Managing breathlessness: a palliative care approach Author: Chin, Chloe; Booth, Sara Abstract: Breathlessness is an important and common symptom globally, affecting patients with a variety of malignant and non-malignant diseases. It causes considerable suffering to patients and also their families, and is a significant cost to healthcare systems. Optimal management of the symptom should therefore be of interest and importance to a wide range of clinicians. Best practice in the management of breathlessness consists of both non-pharmacological and pharmacological interventions as evidenced by recent randomised controlled trials of multidisciplinary breathlessness support services. As well as providing evidence for integration of early palliative care into respiratory services, these revealed that patient distress due to breathlessness can be significantly reduced and better outcomes can be achieved at lower cost than standard care. CHIN, C. and BOOTH, S., 2016. Managing breathlessness: a palliative care approach. Postgraduate medical journal, 92(1089), pp. 393.

Title: Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care Author: Etkind, S N; Koffman, J Abstract: Patients with any major illness can expect to experience uncertainty about the nature of their illness, its treatment and their prognosis. Prognostic uncertainty is a particular source of patient distress among those living with life-limiting disease. Uncertainty also affects professionals and it has been argued that the level of professional tolerance of uncertainty can affect levels of investigation as well as healthcare resource use. We know that the way in which uncertainty is recognised, managed and communicated can have important impacts on patients' treatment and quality of life. Current approaches to uncertainty in life-limiting illness include the use of care bundles and approaches that focus on communication and education. The experience in communicating in difficult situations that specialist palliative care professionals can provide may also be of benefit for patients with life-limiting illness in the context of uncertainty. While there are a number of promising approaches to uncertainty,

as yet few interventions targeted at recognising and addressing uncertainty have been fully evaluated and further research is needed in this area. ETKIND, S.N. and KOFFMAN, J., 2016. Approaches to managing uncertainty in people with lifelimiting conditions: role of communication and palliative care. Postgraduate medical journal, 92(1089), pp. 412.

Title: Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning Author: Thorne, Sally, PhD, RN, FCAHS, FAAN; Roberts, Della, MSN, RN; Sawatzky, Richard, PhD, RN Abstract: None available. THORNE, SALLY, PHD, RN,F.C.A.H.S., F.A.A.N., ROBERTS, DELLA,M.S.N., R.N. and SAWATZKY, RICHARD,PHD., R.N., 2016. Unravelling the Tensions Between Chronic Disease Management and End-of-Life Planning. Research and Theory for Nursing Practice, 30(2), pp. 91-103.

Title: Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study Author: Nielsen, Mette Kjaergaard; Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Bro, Flemming; Guldin, Mai-britt Abstract: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-based approach are needed. We aimed to describe socio-economic characteristics, situational factors, pre-loss grief symptoms, depressive symptoms, caregiver burden, and health status in a general population of caregivers to terminally ill patients. We conducted a nationwide population-based cohort study. Caregivers were systematically recruited through patients registered with drug reimbursement for terminal illness in 2012. Data on socioeconomic characteristics was mainly obtained from Danish registries, whereas data on situational factors, distress, and health was measured in questionnaires. Of patients to responding caregivers (n = 3635), 89 % suffered from cancer, predominantly lung cancer (23 %). Of responding caregivers, 62 % were partners and 29 % were adult children. In total, one third of caregivers reported severe outcome, 15 % reported severe pre-loss grief symptoms, 16.1 % had moderate to severe depressive symptoms, and 12 % experienced high caregiver burden. Partners had the highest levels of pre-loss grief and depressive symptoms, while adult children reported the highest levels of caregiver burden. From this cohort, which was estimated to be representative of caregivers to terminally ill relatives in the general population, we found high levels of pre-loss grief, depressive symptoms, and/or caregiver burden in one third of all caregivers. These findings call for increased focus on caregivers' need of support. NIELSEN, M.K., NEERGAARD, M.A., JENSEN, A.B., BRO, F. and GULDIN, M., 2016. Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study. Supportive Care in Cancer, 24(7), pp. 3057-3067.

BOOKS BACK TO TOP If you are unable to find a book, or require a book that is not on this list, please ask library staff who will be able to locate the book for you using interlibrary loan. Please note that some books detailed below may not be available in your local library and would need to be ordered for you. Compassion: the essence of palliative and end-of-life care Larkin 2016

The patient's wish to die : research, ethics, and palliative care Rehmann-Sutter, C et al 2015

From the back of the book: Since the efforts of Dame Cicely Saunders and the founders of the modern hospice movement, compassion has become a fundamental part of palliative care. In this ground-breaking book, international experts give their critical thoughts on the essence and role of compassion, in both palliative andhospice care over the past half-century. Compassion: The essence of palliative and end-of-life care provides insight into the motivations for, and practice of, compassionate palliative and hospice care, featuring the reflections of leading healthcare professionals, social workers, chaplains and educators. Chapters utilise case examples andfirst-hand experiences to explore the historical and contemporary discourse surrounding the concept of compassion in palliative medicine. This book is relevant to a multidisciplinary audience of palliative care practitioners, including undergraduate and graduate students in sociology, psychology and theology, and healthcare professionals in oncology and gerontology.

From the back of the book: Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken atface-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. This book brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications forpalliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and endof-life scholars from countries where assisted dying practices are legalized and from those where it isn't this book will prove essential reading for all those working or studying in the field of palliative care.

Taunton and SomPar NHS staff - Have you visited the Proquest Ebook Central catalogue? Follow the links below and login via OpenAthens to read online books free for 5-10 minutes each day, send requests for eBook loans or purchase 8 suggestions eBook catalogue About OpenAthens

GUIDELINES

UPTODATE BACK TO TOP Whatâ&#x20AC;&#x2122;s new from our clinical decision-making tool on the topic of end of life care. UpToDate (Access for Musgrove Park Staff only) Please contact library staff for details on how to access these resources; you will need an Athens password.

REPORTS, PUBLICATIONS AND RESOURCES BACK TO TOP SCIE (Social Care Institute for Excellence) End of Life Care National Council for Palliative Care

European Association for Palliative Care European Association for Palliative Care th

14 World Congress of the European Association for Palliative Care- information from the 14 World Congress of the European Association for Palliative Care, held in May 2015 Royal College of Physicians Palliative and end of life care toolkit

National Institute for Health Research Themed review- Better Endings: Right care, right place, right time NHS England Transforming end of life care in hospitals: the route to success â&#x20AC;&#x2DC;how toâ&#x20AC;&#x2122; guide e-Learning for Healthcare End of life care: e-learning modules to support NICE Guideline NG31 Care of Dying Adults in the Last Days of Life

NEW National Council for Palliative Care report The National Council for Palliative Care (NCPC) have published a new report Staff prepared to care? Capacity and competence in the end of life care workforce. CQC Review A different ending: End of life care review This review of end of life care found that people from certain groups in society sometimes experience poorer quality care because providers do not always understand or fully consider their needs. In light of this, the report argues that some commissioners and providers might not be fulfilling their duties under the Equality Act 2010 as all public bodies have a legal duty to consider the needs of a range of equality groups when carrying out their day-to-day work. The review identified examples of good practice, but found that action is needed to make sure everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances. NHS Employers End-of-life care information and training End-of-life care is an important subject. It gives more choice to patients on how and where they die, and ensures that they receive high quality care as they approach the end of their lives. We are working with Health Education England on a new programme of work which aims to support and encourage NHS organisations to invest in the education and training of staff to deliver high quality, end-of-life care. Salford Royal NHS Foundation Trust: Making Staff Experts in Delivering End-of-Life Care This case study outlines the benefits of empowering staff to deliver end of life care through greater education and training. The case study outlines outcomes that were achieved by Salford Royal NHS Foundation Trust including being awarded an outstanding rating by CQC for end of life care services; improved patient care and staff communication; and excellent feedback from patient families. Department of Health: Our Commitment to You for End-of-Life Care This report is a response to an independent review on choice in end of life care. It details the six commitments that the government has made to the public to end variation in end of life care across the health system by 2020. The commitments include: honest discussions between care professionals and dying people; greater choice and personalisation for dying people; greater involvement of family and carers; and a named contact for dying people and their families. National Guideline Alliance: End of life care for infants, children and young people: planning and management Full Guideline This draft guidance outlines what the best palliative care for children and young people should look like. It emphasises the need for children and young people to be treated as individuals and highlights

the importance of children and their families being involved in decisions about their care. The consultation for this draft guidance is now open and will run until 12 August 2016. Seriously ill children face a postcode lottery The majority of children in England with life-shortening conditions, and their families, are being short changed or ignored, our recent survey has found. There are 40,000 children and young people with life-shortening conditions in England, and the number is rising. Many of these children have conditions that are complex and unpredictable and need specialist childrenâ&#x20AC;&#x2122;s palliative care. End-of-life care training - top tips Giving staff the tools, resources and skills they need is crucial to delivering high-quality care for all patients at the end of their lives. This top tips document has been created from conversations with NHS organisations who told us how they made end-of-life care training and education a priority, and how they engaged different staff groups to support the agenda. Kent Community Health NHS Foundation Trust: A Flexible Approach to End-of-Life Care Training Discover the benefits of working flexibly to deliver end-of-life care training in this new case study from Kent Community Health NHS Trust.

TOPIC ALERTS AND UPDATES BACK TO TOP ABSTRACTS AVAILABLE VIA LINKS BELOW- FOR FULL-TEXT PLEASE ASK LIBRARY STAFF Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses JAMA Internal Medicine, June 26, 2016, online first

TWITTER BACK TO TOP The latest from popular Twitter pages dedicated to end of life care: PLEASE NOTE LINKS WORK BETTER IN CHROME BROWSER End of Life Studies @EndofLifeStudy Public Health Palliative Care @PHPalCare European Association for Palliative Care @EAPCOnlus Cicely Saunders Institute @CSI_KCL Palliative Medicine Journal @PalliativeMedJ

TRAINING & NETWORKING OPPORTUNITIES, CONFERENCES, EVENTS BACK TO TOP

15 World Congress of the European Association for Palliative Care- 11 -13 May 2017, Madrid th

5 International Public Health and Palliative Care Conference- 18 - 20 September 2017, Ottawa, Ontario, Canada- Includes links to past conferences and presentations

LITERATURE SEARCH SERVICE BACK TO TOP Looking for the latest evidence-based research but havenâ&#x20AC;&#x2122;t got time to trawl the databases? Do you need a literature search carried out? Do you need to find evidence to support an improvement? Do you want to know how something has been done elsewhere and whether it worked?

Library staff provide a literature search service for busy clinicians who are pressed for time.

To request a search please complete and return the appropriate form, providing as much information as possible. Alternatively if you would like an assisted search training session, where we will sit down with you and go through the steps of a literature search, then please contact the library. Musgrove staff click here to access literature search form Somerset Partnership staff click here to access literature search form

TRAINING AND ATHENS BACK TO TOP Most electronic resources are available via an Athens password. You can register for this via the Library intranet page, or from home at www.swice.nhs.uk and following the link for Athens selfregistration. Please note that registering from home will take longer as it will need to be verified that you are NHS staff/student on placement. The library offers training on how to access and use Athens resources, as well as an introductory course on critical appraisal. You can book a course through the Learning and Development intranet page, or by contacting the library directly.